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Living with cancer· Appointment prep

Appointment sheet: IDH1- and IDH2-mutated acute myeloid leukaemia

One page to bring and write on: your details, the questions for IDH1- and IDH2-mutated acute myeloid leukaemia plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

IDH1- and IDH2-mutated acute myeloid leukaemia

Prepared with OnCo (onco.cc/prep/aml-idh/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

16 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example IDH1 R132 and IDH2 R140/R172 mutations, 2-hydroxyglutarate level, NPM1, DNMT3A and RAS co-mutations, ELN 2022 risk group, IDH mutation clearance as MRD), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Newly diagnosed IDH1-mutated, unfit for intensive chemotherapy
  1. 5.For my situation (newly diagnosed idh1-mutated, unfit for intensive chemotherapy), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Ivosidenib, Azacitidine, Venetoclax, and what side effects should I expect?
  3. 7.How do the results of AGILE and VIALE-A apply to someone like me?
Newly diagnosed, fit for intensive chemotherapy
  1. 8.For my situation (newly diagnosed, fit for intensive chemotherapy), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cytarabine + anthracycline ('7+3'), Ivosidenib, and what side effects should I expect?
Relapsed or refractory
  1. 10.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Ivosidenib, Olutasidenib, Enasidenib or related drugs, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Olutasidenib, Venetoclax, myeloMATCH, Epigenetic drugs (HDAC, DNMT, EZH2, IDH, menin, BET)?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Ivosidenib-azacitidine or venetoclax-azacitidine first, or all three together”. How does that affect my plan?
  5. 16.I read that “Managing differentiation syndrome without stopping an effective drug”. How does that affect my plan?

The words I may hear

  • Differentiation syndrome: When a targeted drug makes leukaemia cells mature all at once, causing fever, fluid in the lungs, and weight gain.
  • Hypomethylating agents (azacitidine, decitabine): Low-intensity chemotherapy that strips chemical 'off' switches (methyl groups) from DNA so silenced genes can be read again.
  • ELN 2022 risk classification: The three-tier system (favourable, intermediate, adverse) that decides how aggressively an adult with AML is treated and whether a transplant is recommended.

Tests and results to bring

Newly diagnosed IDH1-mutated, unfit for intensive chemotherapy: Ivosidenib plus azacitidine (AGILE) or venetoclax plus azacitidine; triplets in trials.

Newly diagnosed, fit for intensive chemotherapy: 7+3 induction with consolidation and transplant by ELN risk; IDH inhibitors added in trials.

Biomarker results to ask for: IDH1 R132 and IDH2 R140/R172 mutations, 2-hydroxyglutarate level, NPM1, DNMT3A and RAS co-mutations, ELN 2022 risk group, IDH mutation clearance as MRD.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call